Cancer Survivors Network - Comments for "Lost Husband to GBM"http://csn.cancer.org/node/225014
Comments for "Lost Husband to GBM"en-csnJeannie,
I am so glad Ihttp://csn.cancer.org/node/225014#comment-1290359
<p>Jeannie,</p>
<p>I am so glad I decided to revisit these boards nearly 14 months after losing Landy. Time truly heals all hurts, although I still miss that sweet, precious man! I have had a super busy year traveling (trying to stay gone as much as possible helps), and I was so blessed to meet a wonderful man on one of my vacations! We are getting along beautifully. </p>
<p>It's been too hard to come here, until now. I can easily remember the stress and worry being a caregiver was, and it took many months to feel that stress leave my body. Perhaps I will never quite be the same again. It was a difficult, yet important journey. I am so glad your boyfriend is doing well. I still believe there are many great success stories, and I wouldn't have changed having that hope until the end. May he wake one day very soon to a tumor that has disappeared and will defy all doctors' explanations! It can happen!!</p>
<p>My sister-in-law (brother's wife) was diagnosed with thyroid cancer this summer, and after surgery they realize it has spread to the lymph nodes. While this is way too soon after losing Landy, we are remaining positive that she will have a complete cure once her iodine treatment is completed next month. We aren't taking it lightly, but we know this type of cancer has a high cure rate. </p>
<p>I hope Landy is proud of how I've mananged (some days better than others). He had told his father he expected me to go on with my life, be happy and he fully expected I'd remarry one day. We'll see...maybe that's next year's post. ;) He knew I wasn't good alone, but he was one-of-a-kind special. I feel a strong sense to live the last half of my life for him, too, with as much love and kindness as he gave while here. </p>
<p>God bless and keep you as well!</p>
<p>Kim</p>
Tue, 09 Oct 2012 01:20:19 +0000KMPondercomment 1290359 at http://csn.cancer.orgIm sorryhttp://csn.cancer.org/node/225014#comment-1189608
<p>Hi Kim,</p>
<p>I am so deeply saddened to hear about your husband’s passing; especially now in February of 2012. I haven’t visited the blog in a while but I thought about you and your husband yesterday and it broke my heart to read your post from last August.</p>
<p>I can’t even begin to imagine how hard it is without him. From our conversations and your descriptions it shows how brave he was and how strong of a woman he has made you. There is no doubt he is looking down from Heaven bragging about what an amazing wife you were to him.</p>
<p>Thank you for inspiring us all.</p>
<p>My boyfriend is doing well. He still does Avastin but is officially off Temodar. In November he did a brain PET scan and it came back cancer free. The tumor is still present but his doctors consider him in remission. It’s still so scary knowing the tumor is there. We have so much faith in God as you do and he will guide us through this.</p>
<p>Thank you again for your story and uplifting words.<br />
I pray that your days get easier.</p>
<p>God bless.</p>
Wed, 01 Feb 2012 17:52:05 +0000Jeannie20comment 1189608 at http://csn.cancer.orgKim, I am so sorry for your losshttp://csn.cancer.org/node/225014#comment-1127882
<p>I am so sorry to hear about your husband. May you find peace in knowing he is in a better place and there is no sufffering or worrying there. God bless you and thank you so much for sharing your husband's journey with us. </p>
Fri, 23 Sep 2011 13:15:49 +0000sadinhollandcomment 1127882 at http://csn.cancer.orgThanks for your posts.....http://csn.cancer.org/node/225014#comment-1127528
<p>Kim - I just registered for this site, but have been reading the forum for a couple of months, and wanted to thank you for you calm, thoughtful, positive but realistic posts on many different topics. I am impressed with your kindness and sincerity, and I'm sure that many people have benefited from your comments. </p>
<p>My husband was diagnosed with a GBM in March 2011, and we have been on the roller coaster ride for 6 months now. He's doing very well overall, but we're aware that it's a very bumpy journey. Thanks for making it a little easier for all of us. Cindy</p>
Thu, 22 Sep 2011 21:54:02 +0000cdolive4comment 1127528 at http://csn.cancer.orgAll I know is that any of ushttp://csn.cancer.org/node/225014#comment-1117815
<p>All I know is that any of us have but only today. This is indeed a challenging disease to beat, but many have. Educate yourself about all your options, and seek other opinions if you can. If you can, try to take one day at a time with this. Don't borrow trouble from tomorrow. I look back on the last two years and wonder how we managed with all the challenges, but we did. We survived each day together. We were grateful for that day, and I know my husband was not afraid. He didn't want to leave me, but he had no fear. </p>
<p>This disease is complicated, and we did often get conflicting opinions, especially after the GBM diagnosis. Doctors want to be hopeful, but they do need to realistically prepare you for what may come. Ask them all the questions you can to best prepare for what you can expect. Hubby and I did. They'll be honest. It's the best way to approach your treatment, with the knowledge you need to make the most informed decisions. </p>
<p>Honestly, my faith has played a major role. No, I do not like it that God called my husband home at 45. That stinks! He gave me sufficient grace to carry me through the toughest challenges and is here still holding me up. This week has been tender, but I know I will be ok. Thank you for letting me share. My husband's life was valuable, as is yours. Your love for each other will give you the strength to make it through whatever you may face. Peace and healing to you as you begin treatment. Hubby had no ill effects from Temodar. He took that with his AA tumors. He ate whatever he wanted and taught school on it and only missed one or two days while on the Temodar. He was tired. Fatigue was his biggest challenge, but he endured!!! Y'all will, too.</p>
Sun, 04 Sep 2011 02:39:15 +0000KMPondercomment 1117815 at http://csn.cancer.orgWow...it's truly incrediblehttp://csn.cancer.org/node/225014#comment-1117811
<p>Wow...it's truly incredible the similarities of our situations. 26 years is a long time to live fully with no problems. Did you ever worry there could be damage from the radiation in between? </p>
<p>In Oct of 2009, we got to Duke for more radiation. It was focused radiation (mask and all) at 60 grays, I think. I kept lots of records early on, but then it got overwhelming. I can tell you we stayed at Duke, we lived in Georgia, while he got the six weeks of radiation. Each day, we'd see improvements to his "listing" as I called it. Hubby had imbalance issues due to the cerebellum tumor. Is your son having the same? I want you to feel free to e-mail me at KMPonder@aol.com. I will even be glad to contact you and talk about this. I will share our story in any way I can. I know this is hard for you, but I want to offer you hope and encouragement as well. Duke told us that Landy could have five years with the AAs, but when the GBM developed on his optic chiasm, we knew time would be shorter without another miracle.</p>
<p>I am doing ok. He died three weeks ago today, and this week's been the hardest. The reality of the loss is starting to sink in. Talking about him, though, even if it's about his cancer is healing for me. He was a brave warrior.</p>
<p>Kim</p>
Sun, 04 Sep 2011 02:29:38 +0000KMPondercomment 1117811 at http://csn.cancer.orgSecond brain cancer dx caused by previous radiationhttp://csn.cancer.org/node/225014#comment-1117137
<p>Your husband and my son share the same histories. Our son (age 34) was diagnosed when he was 8 with a medulloblastoma. He had surgery, for which the surgeon said he got "everything he could see", and radiation, chemo (CCNU, prednisone, vincristine. While our son had long term effects of treatment, including growth hormone deficiency, hypo-pituitary, type 1 diabetes, and some mild learning disability, he went on to lead a full life for 26 years, including living independently, out of state with a good federal job, for 11 years. Then last April our world turned upside down. He was diagnosed with several, inoperable, AA3 tumors. They all occurred in the cerebellum, where he had the highest dose of radiation when he was 8. "The circumstantial evidence is overwhelming," the doc said, "that this second round was caused by the first radiation treatments." Even before this second cancer, I always wondered if we should have refused his having the radiation when he was 8. I feel so guilty about it.<br />
They haven't given us a timeline/prognosis. All they said was that the treatments won't make it go away, just slow things down.<br />
Our son had 4 weeks of radiation this second time around, but the radiation doc was concerned about re-radiating the brain (radiation necrosis). So, our son only received 2/3 the usual dose for this type of cancer.<br />
I'm wondering, did your husband have the full, standard dose of radiation the second time? I'm torn between wishing he was given the full amount, or not having any at all, as is symptoms are worse now, after the radiation, then before. But this time, it wasn't our call anyway, as he is an adult and wanted to go with the radiation.<br />
I hope you are doing well.</p>
Fri, 02 Sep 2011 20:16:41 +0000connsteelecomment 1117137 at http://csn.cancer.org2nd opinionhttp://csn.cancer.org/node/225014#comment-1117060
<p>Now is the time to get a second opinion from one of the brain tumor centers..the great ones..<br />
I don't know where you live (not that it matters) but BEFORE you start any treatments, get a 2nd chance at a 1st diagnosis...There are 20 or so great places...some include (but not all)</p>
<p>UCLA<br />
MD Anderson<br />
Duke<br />
Cleveland Clinic<br />
Dana Farber.....and quite a few others</p>
<p>UNLESS you are happy with where you are at.</p>
Fri, 02 Sep 2011 17:03:01 +0000DistancerunnerXCcomment 1117060 at http://csn.cancer.orgYou give me hope..http://csn.cancer.org/node/225014#comment-1117040
<p>My husband was diagnosed with a 3 cm stage IV GBM at Brigham and Women's on August 8th of this year. He had surgery on August 13th and I was told by the neurosurgeon that he was pleased by the results and he got all they he saw on post-surgical MRI. The oncologist wasn't as optimistic I'm afraid. She said she saw tumor on the post-surgical MRI. I don't understand how two physicians can give two completely different readings on the same MRI. He will be starting Temador chemo and radiation treatments in two weeks. We're terrified...</p>
<p>One month ago, life was normal. Now I'm being told that average life expectancy after treatment is 15 months. I don't know how I will be able to go on without him, I love him so much. I am so sorry for your loss. How do you do it and how will I? I keep praying for strength but I have never felt so alone in my life even though my family and friends have been wonderful. I am grateful for your story and I want you to know that. God bless.</p>
Fri, 02 Sep 2011 16:50:08 +0000maineladydicomment 1117040 at http://csn.cancer.orgI am sorry for your loss.http://csn.cancer.org/node/225014#comment-1116892
<p>I am sorry for your loss. It's tough to look back and realize how we endured as caregivers. It's tough to see our loved ones go through all they did. I always knew he'd do the same for me. I jokingly used to ask him, "You would care for me like this, if the tables were turned?!" It was a hard road, but the lessons learned are important going forward in my life - wherever that leads me.</p>
<p>Congrats on your new marriage!</p>
Fri, 02 Sep 2011 12:05:42 +0000KMPondercomment 1116892 at http://csn.cancer.org